ALS ICE BUCKET CHALLENGE | WHY IT MATTERS TO ME

For the last few days, my Facebook feed has increasingly filled up with video after video of friends, family, people I don’t even know, doing the Ice Bucket Challenge, and my heart might just burst! It’s no exaggeration when I say that I’m literally on the verge of tears every time I see one of these videos. For anyone who has been personally affected by this terrible disease, we have waited and prayed for this moment. Awareness has been a very long time coming. I’ve said several times that someday I would write about my personal experience with ALS (Lou Gehrig’s Disease), and with the recent Ice Bucket Challenge popping up all over the place and going viral, I figured what better time than now to start telling you my story–or my mom’s story really. If you haven’t heard of the Ice Bucket Challenge, you can see what I’m talking about here. It touches my heart that this has caught on and makes me grateful for the power of social media, because there is so much more research and awareness needed for this terrible disease. So for those who are so over the ice bucket challenge or think it’s a “waste of water” (seriously?), let me give you a little perspective on what it means to those of us who have personally had our lives turned upside down by this terrible disease, and why we are jumping out of our skin that there is finally some real awareness being raised about this disease. I’ve heard the criticism around, and truth be told, I don’t really care if the motives for people sharing it are narcissistic, which we all know social media can tend to be, because it’s still spreading the message and I’ll take spreading good over another empty duck-faced selfie any day of the week.

We have a big family event planned this weekend so while we’re all together, we’ll be taking the challenge in honor of my mom, and as I was telling my husband about it last night, he said (a little sarcastically) “Do you really think all of these people spreading a bunch of videos around social media will cure ALS.” And if you’re thinking the same thing, the answer is, “No, no I don’t.” Well, not now anyway, but it could. Had you heard of ALS before you saw one of these videos? Chances are good that the answer is, “no.” Or if you had, you knew little about it. So I have to wonder how many people have now at least Googled it, and educated themselves just a little, and maybe it struck something in them and we now have a new fighter for the cause. The fact the donations have increased something like 1,000 percent since this started, means that for the time being, more money than ever before is going to help fight this b**ch of a disease. Will the money slow down? Inevitably, yes. But, again, we may just have a few more people on our side and every little bit helps.

So let me tell you my story and why this matters to me and so many others whose lives have been affected by ALS. And maybe, just maybe, you’ll be compelled to help us do something about it, know a little more than you did before, or at least change your perspective a little if you’re tired of seeing “all of these videos.

If you have never heard of ALS or don’t know much about it, think of Stephen Hawking or Lou Gehrig, yup, it’s that one–better known as Lou Gehrig’s disease. It’s a very progressive disease that essentially traps you inside your body–Stephen Hawking is a serious anomaly, as most people live about two to five years from the time of diagnosis. Our family was “lucky,” if you can call it that, we got FIVE years. Five years where we watched a woman with the most amazing spirit and determination, clear until her dying breath, become quite literally trapped inside her body. Many of the families we knew got 18 precious months, including a young father who, at that time was the age I am now, with two young children. EIGHT. TEEN. MONTHS. Can you even imagine?

For us, it all sort of started when my mom got up in the middle of the night to let our dog outside and she realized that she couldn’t turn the door handle. There was just no grip, like trying to make a fist when you first wake up in the morning. Things like that had been happening on and off for a few months, so she decided to go to the doctor. I was 17 at the time of diagnosis, my other siblings were 14, 11, and eight, so some of the details of the diagnosis part of it are sort of a blur for me, but I believe it took almost a year of various pokes, prods, appointments and tests, and I remember convincing my mom to let me go with her to her last appointment. I was 17, practically an adult, I could handle it, whatever it was, and of course, it was going to be nothing that we couldn’t fix. You know, because stuff like this just doesn’t happen to me. I remember the doctor sticking little acupuncture type needles all over, with cords attached, to test her muscle response. And then I remember the doctor coming back in, sitting down with my mom and telling her that it was ALS. I don’t remember the exact way she phrased the diagnosis, but what I do remember is my mom saying, with tears in her eyes, “I just want to be able to play catch with my son,” and in that moment, all of us, including the doctor were crying. ALS means that eventually, all of your muscles stop working. And I’m here to tell you, you don’t understand how many muscles you have and what that means until you start to lose them.

It’s funny looking back on the progression, because I think, as with anything that happens over a period of time, it felt slower living in it than looking back now and realizing just how fast everything happened. If that even makes sense. It began with an occasional fall, which my mom would laugh off–always an amazing sense of humor–even though inside I know her heart was absolutely breaking that this was, in fact, progressing. Then, she couldn’t grip the curling iron to curl her hair, so my dad learned how and did it for her. Every. Day. (You can read more about that here.)

By the next year, at my high school graduation, my mom was in a wheelchair. ONE. YEAR. From essentially being able to do most normal every day tasks: drive, take care of kids, help with homework, etc., to being in a wheelchair because your legs have basically just quit on you, oh, and pretty much your arms too. At this point, feeding yourself is monumental feat. And let’s not forgot how important it is to be able to stand when you want to take a shower or use the restroom. My mom still came in and kissed us goodnight every night until she could no longer make the walk up and down the stairs. It killed her inside to not be able to kiss her children goodnight and she always said that was one of the things she missed the most.

I am the oldest, and my mom dreamed of the day that she would get to take me to college and get to help me decorate my dorm room and get all set for that next big life step. Maybe that’s why I still get so obsessive over dorm room decorating at back to school time. When it came time for me to move down to college, I went alone. Three and a half hours away. She was so excited that I was going to her Alma Mater, but my dad was out of town for business, you know, because he still had to earn a living to support our family in addition to now being a full-time caretaker, and while we had amazing help–seriously, there are no words to describe the help that our friends and family were–there was no one to drive my mom and siblings down and tend to her needs while she helped me get settled. So, we went on a big shopping trip a few weeks before, and then we hugged and cried, and I went on my way to move into my dorm. She asked my aunt, who lived in my college town, to help me move in and make sure everything went okay. I know she had a really good cry that night. I don’t recall any of this with resentment, except towards the disease, because when things like this take over your life, you have to learn to roll with the punches and find the silver lining or you will sink into despair, but that’s a post for another day. She was able to come down that Thanksgiving and see all of it, but you know, it just wasn’t the same.

Then, the first night I called her from college, I will never forget “the slur.” I remember saying, “Mom, are you just tired, or is your speech starting to get slurry?” I think we both tried to tell ourselves that she was just tired, but we both knew it was the latter. By the end of that year, year two, unless you were around her a lot, it was hard to understand what she was saying, so most of the time we would have to “translate” what she was saying to others. Have you ever thought about the fact that your tongue is a muscle? And when that muscle quits working, you quit being able to talk. All of your thoughts and intellect are still intact, but you can’t get them out. And you know what happens when your speech becomes impaired? Most people assume that your mind is impaired too, so they start talking to you like you’re five. I’m not saying people weren’t well-intentioned, they all were just trying to be sweet and kind, but for someone like my mom who was social and very smart and well-read, and always had an opinion (a trait that I most definitely inherited) having people suddenly talk to you like you’re stupid, or maybe worse, just stop talking to you altogether because it just takes too much effort or is too uncomfortable, is a very hard thing–to say the least.

Which brings me to one more effect: you’d be surprised how many people just stop coming around anymore because it’s just too hard to see you this way, so, you lose friends…and family. On the flip side, you’d be amazed at the beautiful souls you meet who seem to be sent straight from God and are there at every turn.

So, roughly two years in, this monster of a disease, which seemed to come out of nowhere, had robbed my beautiful mom of basically everything but her spirit–and nothing was going to take that. It was the one thing that the disease couldn’t take from her, try as it may. And since this is getting to be quite the novel of a post, let me just give you a brief overview of some of the things that were to come over the next three years:

–You can’t feed yourself if your arms don’t work and you can’t chew very well when your tongue and jaw feel like a brick, so everything she ate had to be mashed and fed to her (we never got to the point of a feeding tube, but many do). She came up with some crazy concoctions, like blue cheese dressing and avocado. When your food choices are limited, why not just mash your favorite flavors into one? ;)
–My mom took a bath and read her book EVERY NIGHT of my entire life. She would usually read two or three books a week between her down time and baths at night. When your muscles don’t work, you can’t turn the pages of your book, so you have to depend on someone else to do it for you. We used to say, “If only there was, like, a computer that you could read books on, I can’t believe someone hasn’t invented that…” Hello?!! We could have been RICH! What we wouldn’t have given for a Kindle or an iPad back then to make her more comfortable.
–She had a computer, much like Stephen Hawking’s, strapped to her wheelchair. When she wanted to talk, she had to watch a program scroll through a keyboard on the monitor, and hit a mouse with her cheek once it highlighted the letter she wanted. If you missed hitting the keyboard on the letter you wanted, you had to wait for it to scroll through the entire keyboard again. Telling my brother to “clean his room” was no small feat. Forget about full conversations with someone, by the time you’ve finished typing your comment, the conversation has usually already moved on. And forget chasing after a hormonal teenager who walks out of the house in a huff because, well they’re still teenagers.
–Do you ever get uncomfortable in the middle of the night and need to roll over in bed? Well, with ALS, unless someone is there to wake up and turn you over: too bad. You just have to stay that way. And don’t forget, your muscles have atrophied, so you’re basically laying on bone and skin when you’re in bed–it’s not just uncomfortable, it’s painful. So for the caretaker, it becomes like having a new baby. You wake up every few hours to turn them over and hopefully help ease some of the discomfort. Getting up for the bathroom in the middle of the night? Well, you can imagine.
–Hugs? We are an affectionate family. You have to have someone lift your arms around them to give them a simple hug.

Basically you sit in a chair. All day. Every day. For the rest of your life.You have to depend on someone else for everything.  I remember her saying, “I know it’s a lot of work, but I’m tired of everyone telling me, ‘just a minute’ and then forgetting what I need. You guys can get whatever you need or want whenever you need it, I feel like a child.” Please believe that I think of that statement every time I tell Adelie, “just a minute.” This horrible disease takes any sense of privacy or self-sufficiency you once had and there is ONE drug that they think maybe helps life expectancy–by a few months. A single pill and a miracle are your only hope. Did I mention that research is desperately needed?

President’s Day 2005, I got a call from my dad that my mom’s pneumonia, which had seemed fairly innocent for the past week, had taken a turn and I should probably come home. I was already preparing to come home for my grandpa’s funeral (her dad) who had passed away suddenly three days earlier–another story for another day, but the Lord works in very mysterious ways, doesn’t he? My younger sister was on her way back down to school–she had now graduated high school and was attending the same college as me–but she was headed to get some things from her apartment and pick me up. To this day, every time I make that drive, I still remember the exact spot where I looked at my sister and just said, “I have this weird feeling that this is not going to be ok.” My mom got sepsis (a blood infection) and it wasn’t looking good. Then, on her third day in the hospital, it looked like things were going to turn around. She sat up, we talked, we hung out, it was like things were getting back to “normal.” It was the first day my Grandma got to see her, because she had been stuck on “vacation” in Hawaii, making arrangements to get my Grandpa back home for his funeral. After my Grandma went home that night (after much coaxing by us for her to get some rest), my sister and I stayed with my mom. By this time, we were at the hospice center. Even at that time, I didn’t really understand what you go to hospice for, so I was sure we would be taking her home soon. That night, she kept asking me to turn up her music (the soundtrack to Phantom of the Opera–the movie had just come out) because she couldn’t hear it over her oxygen. I remember periodically waking up and she’d just be staring at me. And we’d smile at each other, and after a while, I’d go back to sleep. I know she knew, and she was taking it all in one last time. The next morning, she was back to the state she’d been in for the three days prior. The machines were really the only thing keeping her alive. So, on the day of my grandpa’s funeral, we had to decide to finally let her go and be free of all of this that she had fought so hard for the last five years. My mom passed away on February 25, 2005. She was 45 years old. My dad, the same age, and I was 22, my siblings were 18, 15, and 13. That beautiful life we’d been blessed to be a part of was gone. Taken from us by an ugly disease. And while the journey with ALS itself came to an end, the grief it leaves in it’s wake is a whole different story. It changes you. It changes families. It leaves a hole.

There will come a point in my life where I will have been without my mom for longer than I was blessed to be with her, and no child should EVER have to say that about their parent. My brother mostly doesn’t remember a time when she wasn’t sick, my daughter never “knew” her, at least, in the flesh. She knows her and has since she came to this Earth, but that’s yet another post for another day. My mom never got to see any of us get married, travel with my dad after her kids left home, and she never got to be a grandma. At 40 years old, every hope and dream my parents (who were high-school sweethearts) had imagined together, was shattered and they were told that they would never grow old together, they would never get the opportunity to celebrate the successes of their children, watch them get married, have grandchildren. All of it, would stay merely a dream, or rather, a fantasy because the time here was very limited. After my mom was diagnosed, she tearfully said to her mom, “I would have been an awesome grandma.” That one sentence crushes me every time I think about it–the tears are streaming as I write. She would have been an AMAZING grandmother, and so would so many others taken far too soon by this disease, and THAT is why the Ice Bucket Challenge does make a difference and why it matters to me and to so many others.

If you’d like to learn more about ALS, you can find more information here and here, and also information on where to donate. Is there a cause that’s close to your heart? I’d love to know. 

Comments

  1. says

    thank you for sharing your story. my uncle passed away when i was 17 from ALS. he and my aunt had no children, but he came from a big irish family, and we saw his sisters both go through it, fighting as much as they could so they cold be here with their kids. it’s a horrible disease and i feel much like you do about the challenge- it’s narcissistic, but it could help spread awareness. it was horrifying to watch my uncle, fully there mentally and aware of everything, lose all bodily function, and as you said, live trapped inside his body. i hope that a cure can be found so people can live a full life with the disease.

  2. says

    My dear, sweet friend! I write this with tears in my eyes. I am certain that your mom is looking down on you with great pride. I confess my ignorance about this disease — and it puts a whole new perspective on the Ice Bucket Challenge that has also been filling my FB feed as well. My heart breaks for your loss, but the strength you exude is commendable. Love you!! p.s. I can see your mom in sweet Adelie!! xo

  3. says

    Jenn, your writing is both a testament to horrors of ALS and beautiful tribute to your wonderful mother, a woman I am thankful to have had the opportunity to meet. Your family has been on my mind a lot since the ice bucket challenge went viral. Tears stung my cheeks as I read this. I remembered the time when our sorority rallied to raise money to support ALS research. We proudly wore our tacky lilac tank tops to walk in support of research and to promote awareness. And your mom was there with us. Our funds were a drop in the bucket – but hey, drops eventually fill buckets, right? I hope that the ice bucket challenge adds enough drops to advance the science needed to stop this illness. Much love, sister. ~Jess

  4. says

    Jenn,

    Not a day goes by that my Mom or Justine (and therefore me) doesn’t remember and comment about the incredible example and legacy your Mom left. Words cannot describe the love we have for her and pain we all shared as she suffered through this horrible disease. If we could all be like your Mom, then life would be pretty good. We love your family and pray and think about all of you often.

  5. Tami says

    I love her, miss her, and think of her all the time. She has most certainly been on my mind and tears have flowed in remembrance as I have watched the awareness spread these past days! Jenn, thanks for writing such a lovely tribute to your beautiful mom.

  6. says

    This had to have been hard to write and to share. Thanks so much for sharing your story. The ALS Ice Bucket Challenge rocks and I hope it gives hope to those fighting this devastating disease. In the future perhaps the diagnosis won’t be a death sentence thanks to a bunch of people dumping ice water on themselves to further a cause. You are so correct…perhaps one of them will hold the key to a cure! You don’t know me but here’s a big cyber (((hug))).

  7. Lisa Stewart says

    Sweet Jennifer, what a fabulous woman your mother was! I truly loved her and I miss her very much. I am sure she is so proud of you and of the way you shared that difficult story.

  8. Anonymous says

    Your Mom and I share a birthday, July 28th. I am exactly 6 years older than her. We also share a middle name. Although I never met your Mom she will remain in my thoughts. and you all in my prayers. I am Erica Frames great aunt Patt. I enjoyed meeting your family very much at the reception
    . I was also touched very much by the presence of your Mom. Things will never be “Normal” again, you will just find a new Normal which I am sure you already have. Thanks for your post. I have learned a great deal about ALS.
    Go

  9. says

    I have never read your blog before but visited here just today via the styling home thingy…this post is simply beautiful. Heart-wrenching, absolutely. I have shed many tears tonight reading this and pondering how absolutely terrible it would feel as a mother to watch your own children and know one day you will be gone from them. And they will lose their mother….and all of your love and hope and desires to be with them will not matter and time will pass far too quickly and to be gone with the knowledge that you can’t be there to impart those words of comfort and healing to help those sweet faces and hearts understand why mommy had to go away and leave them behind to heal….it is just utter sadness. What an amazing daughter your mother has left her heart to. You are a gem and your mom should be proud.

  10. Anonymous says

    Thank you for sharing. I came over to your house a few times with Nicole, and one thing that I often think of when I remember your family/mom is how thoughtful she was. I came over one day and before we went downstairs Nicole said, my mom is saying something, so we waited and after a few minutes of Nicole saying letters outloud, she turned to me and said “My mom says that she likes your purse.” It meant so much to me that she would take the time to notice my purse.
    My heart goes out to your family and I can see what a wonderful person she was by how wonderful your family is.
    Thank you again for sharing your story.
    Jessica Turner May

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